AUTISM AND THE FAMILY: A QUALITATIVE PERSPECTIVE
Paul W. Glass
(ABSTRACT)
The focus of this dissertation was to gain a better understanding of autism, and its effects on family life. Studies have been done on the behavioral and cognitive effects of autism on the affected child, and how those effects manifest themselves into family life. No studies were found, however, that give a rich, qualitative account of what it is like to live with autism using first hand accounts as data, and what and how families are learning in the process.

Using a phenomenological framework, this study was comprised of interview and observational data collected at the homes of six families with an autistic child. Selection criteria required that participants be parents living with the clinically diagnosed autistic child and, willing to participate in a study that would allow the researcher home visits. The data were analyzed using qualitative software (NVivo) and themes began to emerge. The themes were used to answer the question: What is the experience of living with an autistic child, and what does that experience mean?
Knowledge was added to the current literature on autism in the areas of spousal support, expectation adjustment, finding joy in the "little things," avoidance, grieving, anxiety about the future, support systems, social withdrawal, divide and conquer, anger, embarrassment, sadness, intensity, living in the present, and ambiguity.

Many themes generated by this study beconed future research. Included in this grouping: (a) The placement of anger generated by the implications of living with an autistic child. (b) The lack of sibling interaction and its affects on the families. (c) The stability of the family prior to the diagnosis concerning the adaptive or maladaptive response to the diagnosis. (d) The role of spousal support in the autistic family.
Knowledge generated by this study can be used in a variety of educational ways: (a) the education of the family with an autistic child, (b) the education of professional caregivers that treat the child, but have a poor understanding of what family life may be like and, (c) law makers, insurance companies, the general public, and our schools could be made more aware of autism and family life, again allowing some degree of empathy to understand the hardships these families endure.